Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

Those who lost their battle with ASPS :(
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Jussi
Truly a good accountance with antibiotics —not steriods .
:l
Two different affects.

Talk tomorrow
Night
Debbie
Olga
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Re: Jussi from Finland - Dx 2008

Post by Olga »

Your blood work is done every time before the infusion. Ivan has an online access to his results when it is done at the local lab or takes pictures when it is done at the cancer treatment facility. Next time you are there, take pics?
Olga
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

In Finland I dont think they routinely count lymphocytes. For savety they only test overall white cells and often neutrophils. I can ask for full white cell count. Unfortunately even if my lymphocyte count compared to neutrophil count is ideal. It doesnt prove that I will respond.
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Actually neutrophil count will be sufficient as if neutrophil count is low then lymphocyte counts is most likely high. There are other white blood cells, but there arent too many of those. So it is no were near accurate, but if neutrophils are low, while overall white blood cell count is ok, that is positive sign. Majority of healthy population actually have neutrophil/lymphocyte ratio below 4.1, so all this number tells, if there is normal amount of white blood cells. If there isnt, that is obviously a bad sign.
Ivan
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Re: Jussi from Finland - Dx 2008

Post by Ivan »

How are you feeling overall? Able to exercise?
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Well cardiologist allowed me to raise my heart rate to 110. If I take 10 mg of propral hour before exercise it is possible to do some very slight exercise with crosstrainer.
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

So axitinib can have less effects on immunesystem, than other tkis like soretinib. Cediranib and pd1 -inhibitor trial just started in solid tumors, so in theory, cediranib shouldnt inhibit immunotherapy. Actually neutropenia is common side-effect of cediranib, so combination should work.
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Ekg still better than after ventricular tachycardia, but nowhere near normal. St-depression and t-inversion consider lateral ischemia. After ventricular tachycardia ekg looked like infarct. T-inversion has been there for years, so that is normal.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Me thinking and writing at rhe same time again. Actually poor placement of electrore can explain ekg changes. As three weeks ago my ekg was quite clean. So possibly some time my electrodes were better connected to skin than other. Considering that I have been in crosstrainer daily and my heart beats fine there and always unless I start to worry about the subject. When I worry about my heartrate highest it goes is 100. This is borderline tachycardia. If my heart would be truly getting worse I should experience frequent episodes of tachycardia. Consireding, that my heart works fine I am tempted to trust in the ekg taken 3 weeks ago.

Lets say both ekgs are perfectly accurate, then my heart would have improved first and then turned worse. Possible, but unlikely. Also this fits better in inflammation in the heart than tumor progression. If this is side-effect from immunotherapy it can be treated with steroids.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Oh and subcutaneous met is definitely smaller. Before immunotherapy it was at least 1.5 cm, most likely few mm more. After 3 weeks it was 1.2 cm. Now it is around 0.8 cm and so soft and flat, that it is hard to measure. It is possible, that 8 gy in 3 fractions would do this to so small tumor, but knowing how radiation resistant asps is my best quess is, that changes of radiation alone killing the tumor are 50 percent, but this doesnt explain 3 mm shrinkage before radiation. So question is did I measure the lesion somewhat correctly.
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

Actually poor skin connection to electrodes can greate artifact looking like st-depression, but it cant explain why my ekg 3 weeks ago was better.so either my heart has started to detoriate during these 3 weeks or electrodes werent connected well. Which one is more likely. Naturally pro-bnp will offer more information.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Jussi
Hope you are able to get news of bloodwork soon , to give you a piece of mind .
Debbie
arojussi
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Re: Jussi from Finland - Dx 2008

Post by arojussi »

After cross-trainer ”exercise” about 45 minutes max heart rate 110 my heart rate quicly goes down to 65. This shouldnt be possible if my left fentricle would be very small, because tumor is pressing it. If tumor would be as big as in the early summer my heart shouldnt be physically able to pump enough blood to my body with that slow heart rate and I should be light headed and have very cold hands and feets, because my non-vital organs couldnt get enough blood. Even if immunesystem manages to kill the tumor, obviously it will take moths before necrotic tissue is cleaned and most likely some scar-tissue will remain. But assuming, that I have no reaction to immunotherapy and asps has grown all this time this heartrate simply makes very little sense.
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

Hi Jussi
You are still on 10mg of propranol ?
How long before you are seeing that heart rate drop over 40 beats?
45 minutes ?
Debbie
D.ap
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Re: Jussi from Finland - Dx 2008

Post by D.ap »

It certainly sounds encouraging Jussi :)
Debbie
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